Because of a lack of research pertaining to my Cerebral Palsy and being premature, I am still left with uncertainty as I age.
When I was a little girl, even with my physical problems I still assumed I would age in the same way as everyone else, but now I know that’s simply not true. It would never have occurred to me to think about the neurological side of my condition and how that would play out, how I would age physically and whether there is a link between the two.
Now just getting through the day can be a challenge for me. Having just come back from a weekend in Scotland having to cope with respiratory problems again, just reinforces those challenges. I believe there is a correlation between how much I excerpt myself and getting ill.
I have no idea how the neurological and the physical side of Cerebral Palsy correlate together, only what I have to deal with, but I am beginning to believe and see a link between the two. Through my experiences I now know more than I have ever known, because of what I deal with and yet there is still no more additional research out there, apart from what we already know about Cerebral Palsy and that is a sad reality for many of us.
All we know is what we have to deal with physically. What each of us will have to deal with will be different, because different parts of the brain will always be affected. It would be difficult to do any research on that. My last Consultant was very open with me, when he said he would be very surprised if in his lifetime there was ever any research undertaken on Cerebral Palsy. I understand his sentiments but am saddened by those facts.
Finally, the neurological side of any condition is always the most important. Without the neurological side in tact we will always struggle physically and I believe that to be true.